Learning to Parent a Child with a Diagnosis of Aspergers

Question

Our son now 6 went for assessment (Ireland) last Friday after a lot of form filling on his history etc. and doing tests with him, they - like me - have come to conclusion he has all the signs of a child with Aspergers (high functioning). Now that I finally have medical proof of what I have suspected for years, where do I go from here? How can I make his day easier? Basic tasks are major hurdles.

Answer

When moms and dads seek help for their youngster, they encounter varied opinions – he'll outgrow it, leave him alone, it's no big deal, he just wants attention, and so on. Many professionals try to work with the Aspergers (high-functioning autistic) youngster as if his disorder is like other developmental disorders, but it is quite different. In most cases, there is a great misunderstanding by many people of the needs of these special individuals.

Diagnosis can be difficult. For the inexperienced, recognizing the defining characteristics of Aspergers can be difficult, and misdiagnoses are quite common. This is further complicated by the fact that an Aspergers youngster or teen has many of the same characteristics found in other disorders. These various characteristics are often misinterpreted, overlooked, under-emphasized, or overemphasized. As a result, a youngster may receive many different diagnoses over time or from different professionals.

For example, if a youngster with Aspergers demonstrates a high degree of attention deficit hyperactivity disorder (ADHD) - that might be the only diagnosis he receives. However, this is a common characteristic of Aspergers kids. The same holds true if obsessive or compulsive behaviors are displayed – the youngster gets labeled with obsessive-compulsive disorder (OCD) instead of Aspergers. The following traits are also commonly seen in those with Aspergers in varying degrees. However, just because these traits are there, it doesn't mean that the youngster should be diagnosed differently; these traits should be noted as significant features of Aspergers:

• Anxiety
• Difficulty with pragmatic language skills
• Hyperlexia (advanced word recognition skills)
• Motor deficits
• Oppositional defiant disorder (ODD)
• Sensory difficulties
• Social skills deficits

Professionals who do not have much experience with Aspergers have a hard time identifying the defining characteristics. For example, social skill deficits may be noted by a professional, but then they are often downplayed because the youngster or adolescent appears to be having appropriate conversations with others or seems to be interested in other people. But with an Aspergers youngster, the conversations are not generally reciprocal, so the youngster must be carefully observed to see whether or not there is true back-and-forth interaction. Also, many Aspergers kids have an interest in others, but you need to clarify if the objects of their interest are age appropriate. Do they interact with peers in an age-appropriate fashion? Can they maintain friendships over a period of time or do they end as the novelty wears off? These are the types of observations and questions that must be asked in order to ensure a proper diagnosis.

Another example of an overlooked area is the narrow routines or rituals that are supposed to be present. This does not always manifest as obsessive-compulsive behavior in the typical sense, such as repeated hand washing or neatness, but rather in the insistence on the need for rules about many issues and situations. These kids may not throw tantrums over their need for rules, but may require them just as much as the person who has a meltdown when a rule is violated. In essence, there is no single profile of the typical Aspergers individual. They are not all the same, as you will see in later chapters.

Because of these subtleties and nuances, the single most important consideration in diagnosis is that the person making the initial diagnosis be familiar with autistic spectrum disorders – in particular, Aspergers. They should have previously diagnosed numerous kids. To make a proper, initial diagnosis requires the following:

1. An evaluation by an occupational therapist familiar with sensory integration difficulties may provide additional and valuable information.

2. It is important to include a speech and language evaluation, as those with Aspergers will display impairments in the pragmatics and semantics of language, despite having adequate receptive and expressive language. This will also serve to make moms and dads aware of any unusual language patterns the youngster displays that will interfere in later social situations. Again, these oddities may not be recognized if the evaluator is not familiar with Aspergers.

3. The youngster should see a neurologist or developmental pediatrician (again, someone familiar with autistic spectrum disorders) for a thorough neurological exam to rule out other medical conditions and to assess the need for medication. The physician may suggest additional medical testing (blood, urine, fragile X, hearing).

4. You (both moms and dads) and your youngster should have sessions with a psychologist where your youngster is carefully observed to see how he responds in various situations. This is done through play or talk sessions in the psychologist's office and by discussions with both moms and dads. The psychologist may ask you to complete checklists or questionnaires to gain a better understanding of the youngster's behaviors at home and/or school. If the youngster is in school, the psychologist may call the youngster's teacher or ask her to complete additional checklists. The checklists or questionnaires used should be ones that are appropriate for individuals with Aspergers. It is important to determine the IQ level of your youngster as well. An average or above-average IQ is necessary for a diagnosis of Aspergers.

O.K. My youngster has been diagnosed with Aspergers – so now what?

Parenting kids displaying Aspergers characteristic behavior will often require an approach which is somewhat unique to that of other kids. Finding the balance between understanding the needs of a youngster with Aspergers and discipline which is age appropriate and situationally necessary is achievable when applying some simple but effective strategies. These strategies can be implemented both at home and in more public settings.

General Behavior Problems—

Traditional discipline may fail to produce the desired results for kids with Aspergers syndrome, primarily because they are unable to appreciate the consequences of their actions. Consequently, punitive measures are apt to exacerbate the type of behavior the punishment is intended to reduce, whilst at the same time giving rise to distress in both the youngster and parent.

At all times the emotional and physical wellbeing of your youngster should take priority. Often this will necessitate removing your youngster from a potentially distressing situation as soon as possible. Consider maintaining a diary of your youngster's behavior with a view to ascertaining patterns or triggers. Recurring behavior may be indicative of a youngster taking some satisfaction in receiving a desired response from peers, moms and dads or teachers.

For example, a youngster with Aspergers may come to understand that hurting another youngster in class will result in his being removed from class, notwithstanding the associated consequence to his peer. The solution may not be most effectively rooted in punishing the youngster for the behavior, or even attempting to explain the situation from the perspective of their injured peer, but by treating the root cause behind the motivation for the misbehavior...for example, can the youngster be made more comfortable in class so that they will not want to leave it?

One of the means to achieve this may be to focus on the positive. Praise for good behavior, and reinforcement by way of something like a Reward Book, can assist. The use of encouraging verbal cues delivered in a calm tone are likely to elicit more beneficial responses than the harsher verbal warnings which might be effective on kids who are not displaying some sort of Aspergers characteristic. If necessary, when giving directions to cease a type of misbehavior, these should also be couched as positives rather than negatives. For example, rather than telling a youngster to stop hitting his brother with the ruler, the youngster should be directed to put the ruler down.

Obsessive or Fixated Behavior—

Almost all kids go through periods of development where they become engrossed in one subject matter or another, but kids with Aspergers often display obsessive and repetitive characteristics, which can have significant implications for behavior.

For example, if an Aspergers youngster becomes fixated upon reading a particular story each night, they may become distressed if this regime is not adhered to, or if the story is interrupted. Again, the use of a behavior diary can assist in identifying fixations for your youngster. Once a fixation is identified, it is important to set appropriate boundaries for your youngster. Providing a structure within which your youngster can explore the obsession can assist in then keeping the obsession within reasonable limits, without the associated angst which might otherwise arise through such limitations. For example, tell your youngster that they may watch their favorite cartoon for half an hour after dinner, and make clear time for that in their routine.

It is appropriate to utilize the obsession to motivate and reward your youngster for good behavior. Always ensure any reward associated with positive behavior is granted immediately to assist the youngster recognizing the nexus between the two.

A particularly useful technique to try to develop social reciprocity is to have your youngster talk for five minutes about a particularly favored topic after they have listened to you talk about an unrelated topic. This serves to help your youngster understand that not everyone shares their enthusiasm for their subject matter.

Bridging The Gap Between Aspergers and Discipline and Other Siblings—

For siblings without Aspergers syndrome, the differential and what at times no doubt appears to be preferential treatment received by an Aspergers sibling can give rise to feelings of confusion and frustration. Often they will fail to understand why their brother or sister apparently seems free to behave as they please without the normal constraints placed upon them.

It is important to explain to siblings or peers of Aspergers kids and encourage open discussion about the disorder itself. Encouragement should extend to the things siblings can do to assist the Aspergers youngster, and this should be positively reinforced through acknowledgement when it occurs.

Sleep Difficulties—

Aspergers kids are known to experience sleep problems. Kids with Aspergers may have lesser sleep requirements, and as such are more likely to become anxious about sleeping, or may find they become anxious when waking during the night or early in the morning.

Combat your youngster's anxiety by making their bedrooms a place of safety and comfort. Remove or store items which might be prone to injure your youngster if they decide to wander at night. Include in the behavioral diary a record of your youngster's sleep patterns. It may assist your youngster if you keep a list of their routine, including dinner, bath time, story and bed, in order to provide structure. Include an image or symbol of them waking in the morning to provide assurance as to what will happen. Social stories have proven to be a particularly successful tactic in decreasing a youngster's anxiety by providing clear instructions on how part of their day is likely to play out.

At School—

Another Aspergers characteristic is that kids will often experience difficulty during parts of the school day which lack structure. If left to their own devices their difficulties with social interaction and self management can result in anxiety. The use of a buddy system can assist in providing direction, as can the creation of a timetable for recess and lunch times. These should be raised with class teachers and implemented with their assistance.

Explain the concept of free time to your youngster, or consider providing a separate purpose or goal for your youngster during such time, such as reading a book, or helping to set up paint and brushes for the afternoon tasks.

In Public—

Kids with Aspergers can become overwhelmed to the point of distress by even a short sojourn in public. The result is that many moms and dads with Aspergers simply seek to avoid as much as possible situations where their youngster is exposed to the public. Whilst expedient, it may not offer the best long term solution to your youngster, and there are strategies to assist with outings.

Consider providing your youngster with an ipod, or have the radio on in the car to block out other sounds and stimuli. Prepare a social story or list explaining to the youngster a trip to the shops, or doctor. Be sure to include on the list your return home. Consider giving your youngster a task to complete during the trip, or having them assist you. At all times, maintaining consistency when dealing with Aspergers and discipline is key. It pays to ensure that others involved in your youngster's care are familiar with your strategies and techniques, such as those outlined above, and are able to apply them.

Most importantly, don't hesitate to seek support networks for moms and dads with Aspergers syndrome, and take advantage of the wealth of knowledge those who have dealt with the disorder before you have developed. The assistance you can gain from these and other resources can assist you in developing important strategies to deal with problems with Aspergers in a manner most beneficial to your youngster.

My Aspergers Child: Preventing Meltdowns and Tantrums